Monthly Archives: May 2014

More on the modified measles vaccine: a personal story

Many thanks to Karen for posting the link to a Mayo Clinic article that contains more details about the modified measles vaccine study that I discussed briefly in my previous post. More specifically, it tells us more about the woman who had the best response to the treatment, which gives us the personal side to this story…always very nice to have. An interesting read: http://goo.gl/rUyK9j

Fingers crossed for her…and for all of us!!!

Home…and a measles vaccine tested on myeloma patients…

My Dad is finally home from the rehab center. Relief! Joy!

As you can imagine, I have been incredibly busy in these past few weeks (so much to do!), but I’d still like to apologize for having ignored the blog for so long…AND I’d also like to thank those of you who have written me private and public messages of support…much appreciated in this difficult time, let me tell ya!!!

But really, things are going very well. Dad has made a remarkable recovery from the stroke (=it was a lacunar stroke, we were informed), and, as strange as this is going to sound, in my opinion he seems better than before the stroke, which goes to show that all the exercise he did on a daily basis at the rehab center has worked like a charm.

I’m still at my parents’ house, of course, and I will be here for another couple of weeks, just to see my parents through this initial phase. I plan to be back in Florence for Stefano’s birthday…June 7, that is. Because of what happened to my father, Stefano and I weren’t together on our 15th wedding anniversary earlier this month (indeed, I confess I completely forgot about it until now!), but I really want to be with him on his birthday…

Now for the measles vaccine mentioned in my post’s title: about ten days ago I was notified by many blog readers of a possible “cure” for myeloma. So I clicked on and read many of the articles discussing this matter. In a nutshell, two myeloma patients were singled out from a Mayo Clinic Phase I clinical trial testing a genetically modified, high-dose measles virus on patients with myeloma who had been through all the usual treatments and really had no options left.

From what I read, it seems that most patients did not respond to the modified measles treatment. But the news went viral anyway, based on the case of a patient, a woman, who went into complete remission, which is amazing news, of course…or so I thought at first. According to a Cancer Research UK article (see below link), the tumor she’d had on her forehead, which had initially disappeared during treatment, did return at some point and is now being treated with radiotherapy. So I wonder what that means…hmmm…

As for the other patient, also a woman, her myeloma initially responded well to the treatment but then, sadly, came back with a vengeance (that is, it was worse than before), according to the Cancer Research UK article, which I really encourage you to read, mainly because it has a lot of details about the trial, including dosage of the vaccine, etc. AND it is easy to read.

So, what to make of all this? Not much, in my opinion. It’s simply too early, and I don’t feel very excited about it. But, certainly, it’s an intriguing study…

And now for the links:

Here’s the Cancer Research UK article: http://goo.gl/Bufh7s

I chose this Medical News article mainly because, toward the end, it links to another article discussing a study that has found a link between the “aging” gene and myeloma….certainly worth looking into when I have more time: http://goo.gl/KR0sGs

Stefano sent me this article published in one of Italy’s top newspapers, the “Corriere della Sera,” proving that there has also been international interest in the outcome of the Mayo Clinic measles trial (note: the article is, obviously, in Italian!): http://goo.gl/5OCF4M

For those who enjoy/understand medical jargon, here is the link to the actual Mayo Clinic trial proceedings: http://goo.gl/b4QzPW

That’s it for now! Take care, everyone! Ciao! :)

Diverted…

Something else happened last week (weekend, really), which could have been really devastating, especially for me. It has nothing to do with myeloma or strokes, but with flights and airlines…

On Saturday Stefano left for Italy…or so we thought. As usual, at a certain point I began tracking his flight online. No problem, in the beginning. The airline’s website showed that the flight had left more or less on time.

I checked back about an hour later and discovered that his flight had been “diverted” and was on its way back to Boston.

Diverted? DI-VER-WHAAAT???

I immediately called the airline (which I won’t name…pointless to do so, since I imagine that all airlines react in the same manner…) and was told absolutely NOTHING…something similar to this: “I’m sorry, m’am, all we know is that the flight has been diverted and is returning to Boston.” During that first phone call, I burst into tears and began shaking (I never shake, by the way…And, FTR, my common sense kicked in after about 20 minutes, so I stopped shaking…but boyohboy was I scared…).

In addition to tracking Stefano’s flight on the airline’s website, I also used a website called Flight Beware (= not its real name, in case you’re wondering)…A handy Flight Beware graph showed that Stefano’s flight had turned around more or less around Halifax, Nova Scotia.

But…why had it turned around? WHY??? What had happened?

For three hours I tracked Stefano’s flight on every tracking website I could get my fingers on.

For three hours, more or less every 15-20 minutes, I called the airline, hoping for some news. And every time I got the same, standard, almost robotic answer: “Sorry, m’am, we don’t know what happened. Thanks for calling THE AIRLINE.”

Thanks for calling THE AIRLINE??? You’ve got to be BLOODY KIDDING!!! I know it’s part of the airline reps’  training (and in fact I resisted the temptation to get angry and/or growl…after all, none of this was the fault of the poor rep!), but really, under special circumstances such as these, the airline should really prepare their reps to handle things in a more reassuring way…and GIVE US SOME NEWS, for crying out loud!!!

Now, according to the airline’s website, Stefano’s flight should have landed in Boston at 8:01 PM. And that is precisely when Flight Beware–which, until 8:01, had been tracking the flight closely–suddenly displayed “no result.” NO RESULT???

I admit that I panicked and began calling THE AIRLINE almost every five minutes. Worst case scenarios popped into my mind, even hijackings, since the airline reps were refusing to tell me ANYTHING…

At 9:30 PM,, a reasonable rep finally let me know that the flight had landed…an hour and a half earlier…uhm.

Then, just a few minutes later, Stefano called. He’d just gotten through customs and had been informed that he was to spend the night in Boston. RELIEF!!! Happy dance!!! 😀

He told me what the airline reps hadn’t: about two hours into the flight, the pilot announced that a RED light had gone on, that it was therefore too dangerous to proceed and that he was turning back toward Boston (thank you, Mr. Pilot! If I could, I would hug and kiss you, every member of your family, and your next door neighbors…Grazie!!!). So it was some sort of mechanical problem…obviously not a big one.

And this leads me right into the main point I’d like to make: what possible security rule would have been violated if, shortly after 8 PM, an airline rep had told me that my husband’s diverted plane had landed safely back in Boston? Why did I have to wait another hour and a half to receive this information? I can understand that the airline reps would hesitate to inform me of a mechanical problem while the plane was still up in the air, but why couldn’t i have been told that it had landed?

Believe me, when it comes to airport and airplane security, I’m the first to approve. I take off my shoes before being told to do so, I don’t mind waiting in line for ages (lots of people get irritated when there are delays, but I don’t), I’m super careful about liquids in my hand luggage, etc.

Speaking of liquids…I follow the security rules, even when they don’t make much sense…like when, a few years ago, a customs official threw away my organic hand cream because it was in a tube that was more than 100 ml…And here let me bring up a pet peeve of mine, just quickly: if I’d put that very same hand cream inside a few 100 ml bottles, it would have been okay. Same cream, same quantity. Yet, as I recall, you can bring a couple of your golf clubs on the plane with you. So yes, I don’t understand some of the rules…But fine, whatever, no problem, lesson learned, won’t make that mistake again.

As you know (see previous post), last week wasn’t the easiest week for me and my family. And then, what happened on Saturday evening with Stefano’s flight…well, I don’t know how I managed to get through all those scary hours, not knowing what had happened to the love of my life…my best friend…my handsome brilliant soulmate…

Well, this experience highlights the need for airlines to revise their policies concerning customer “assistance.” In some cases, exceptions should be made…providing, of course, that no sensible security issues are in danger of being violated.

But this is just my opinion, as usual. And hey, the most important thing is that my Stefano is fine. He spent the night in an airport hotel in Boston and left for Italy the following day. He’s now safely back in Florence…with our cats.

Nothing else really matters…

It’s just a story…

Luckily…

The week from hell…but it could have been worse…a lot worse…

This post will explain why I haven’t posted a word on the blog for many days, why I have “disappeared” from Facebook and why I haven’t answered any blog reader queries since Sunday, April 27, which is when Stefano and I returned to Cape Cod from New York City.

By the way, we had a total BLAST in New York…an incredible amazing fabulous fun interesting time…and let me add that a very big part of our marvelous NYC experience was the time we spent with my blog reader John, his wife and their two super-adorable pugs…thankyouthankyouthankyou, you two (I will be sending you a package soon!)!!!!!

But I’m not going to talk about New York right now…I will write a separate post about it at some point…

No, today’s topic is the week from hell (mentioned in this post’s title) = the week after we got back from New York…

Where do I start? Well, my father taught me it’s always good to start at the beginning, so that’s what I’m going to do.

Let’s see. As I mentioned, Stefano and I got back to my parents’ house on Sunday, April 27, in the late afternoon. Everything was fine.

Then, on Monday night, my father mentioned he’d had a bit of weakness in his legs while he was going up the stairs to go to bed. We thought nothing of it. He’s very tall and has had a few “balance” problems for years. We just thought he was tired. After all, he’s 86 and a half years old…

The following day (April 29), right after lunch, I heard a strange banging noise coming from the half bathroom on the ground floor. I knew my father was inside, so I asked if he was okay. He answered that he had somehow slipped to the floor and couldn’t get up. I tried to open the door, but he was leaning against it. Now, this is a very small bathroom and, as I mentioned, my Dad is a big guy, so I called Stefano and finally, after getting my Dad to move slightly away from the door, the two of us managed to get inside. My Dad was exhausted and sweaty from the effort of sliding away from the bathroom door. And, since he couldn’t stand on his own, we essentially picked him up and took him into the dining room.

Mom called an ambulance, even though Dad tried to reassure us that he was fine and didn’t want to go to the hospital, and in fact he looked fine and was speaking normally. But we knew that what had happened in the bathroom wasn’t normal and wanted to have him checked out.

After getting to Cape Cod Hospital, Dad had a bunch of tests done, including a CT scan. We were told that nothing out of the ordinary had showed up but that he was being admitted to the hospital on “observation” status for the night.

The following morning (this would have been Wednesday), Dad had an MRI that showed he’d had a mild stroke (more than a TIA, but not a massive stroke). We were not informed about the stroke, however, until late afternoon, when Dad’s hospital doctor finally came to speak with us.

We were stunned. Absolutely stunned.

And this brings me to WHY I’ve given so many details about what happened. Until now, I had been under the impression that strokes are always accompanied by slurred speech and drooling and paralysis. Well, that is not the case. There are different types of strokes, and different levels of severity.

Dad’s stroke was caused by a blood vessel popping and bleeding in the right side of his brain, which controls the left side of his body..I believe this is called a hemorrhagic stroke. As far as I can tell, and from what we’ve been told, his main post-stroke symptom is a bit of weakness on the left side of his body (weakness, not paralysis, thank goodness), so he should be able to recuperate 100%…or thereabouts.

After a four-day hospital stay, Dad was transferred to a rehabilitation center, where he will remain for about two weeks. He’s doing amazingly well, I think. And I have to say that I’m really impressed with the level of care he’s been receiving, both at the hospital and now at the rehab center.

Well, I was supposed to go back home to Italy with Stefano on Saturday, May 3. But I couldn’t leave, of course. I’ll be staying here until my father comes home…and until I’m sure that my parents will be okay by themselves.

Needless to say, from now on we will be paying plenty of attention to any signs of weakness in our limbs…all possible signs of a stroke…

And that is the main reason why I’ve written this post…this information could possibly be of use to others, too.

Always pay attention…